Disqualified for Personhood by Dying

Doctors who try to soften a blow by denying there's anyone there to lose

This week, I’m discussing the way our attention to dignity can dry up when someone is on the cusp of death. On Thursday, I’ll have your thoughts on Ross Douthat’s Lyme memoir and how to suffer well.

Content note: This week’s newsletter includes discussion of a high-risk pregnancy and twins who ultimately are ok. It also includes some discussion of children I lost before birth.

I read parts of Sarah Ruhl’s new memoir, Smile: The Story of a Face aloud to my husband. The playwright brings all her wit to her story of having her face paralyzed by Bell’s Palsy for a decade. The book is a good complement to Ross Douthat’s Lyme memoir The Deep Places (which I reviewed here).

Ruhl and Douthat both find themselves pushed to the fringes of medicine when they fail to recover on schedule. They both have to navigate being parents while finding that essential parts of their selves feel out of reach. They both have to decide what it means for them to live with less, unsure that full recovery will ever be a possibility.

But the parts I couldn’t read aloud were in the time before Ruhl is stricken with her palsy, and her worry is all for her children. All twin pregnancies are high-risk, and she develops a dangerous complication. (She self-diagnosis it, and has to push to be tested by a skeptical doctor). As her medical team acknowledges the danger, they seem to stop acknowledging her children.

A week later, my test came back positive for cholestasis of the liver. Now, rather than seeing the tolerant, kindly faces of doctors indulging their anxious patient, I saw the stern and compassionate faces of brilliant doctors trying to make life-and-death decisions.

“Every three days,” they said, “we will do an ultrasound to make sure there is still fetal movement. We cannot promise that in the intervening days the fetuses will not expire.” (I couldn’t tell if I was imagining that it was at this point they changed their language from “baby” to “fetus.”) They made sure I knew that they could make me no promises about the safety of the babies while trying vaguely to reassure me that everything was all right.

Her children are born safely, though they both need a stay in the NICU, and Ruhl writes about her strained relationship with the NICU nurses. She would go home and bake treats for them, but was simmering with anger. The nurses rarely referred to her babies by name, calling them just “Baby A” and “Baby B,” even though, as Ruhl notes, their names were on their charts and on their monitors.

She bakes furiously, hoping that the gifts make the nurses see her as a person and thus see her babies as people. She worries that if no one calls them by name, the babies will be untethered and won’t survive. (Ultimately, Hope and William do well and go home).

I’m in my third trimester of pregnancy now, and since we moved during all this, I had to meet a new set of midwives and go over my entire medical history again, while a junior member of the staff typed up what she considered the “relevant” details of some of the saddest times of my life into the electronic chart.

Her: So what month was that ectopic?

Me: We lost Camillian through an ectopic pregnancy in December 2018.

My NaPro doctor made custom fields in her medical chart to record each of our children’s names. The assistant didn’t write them down or repeat them back to me when she pressed for more of the necessary details.

I was as angry as Ruhl (though I thought the situation wasn’t salvageable with baked goods). I don’t think my doctors or hers meant to be cruel, but there’s an awful reflex that leads doctors to stop talking about babies as real, the second it looks like they might die or once you learn that they are dead.

The first time I became pregnant, the intake nurse asked, “And how do you feel about being pregnant?” only using “baby” once I’d dignified the child by clarifying I didn’t want an abortion. Everyone uses “heartbeat” to talk about what you see and hear at ultrasounds, unless it’s about a baby whose heart you plan to stop, and then it’s “fetal pole cardiac activity.” [The link is to a proponent of the phrase].

My known desire for my child wasn’t enough to protect them after death from losing the dignity of the word “baby” or “died.” Instead, my OB shifted back to the language she used before she was sure if we were giving the baby permission to exist. “The pregnancy has been completely expelled, no need for a follow-up,” she told me.

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What I wish I knew is, Are doctors trained to do this? I don’t think oncologists speak this way when they give a terminal diagnosis, either directly to a patient or to their caregiver. But Ruhl’s children have been delivered, the nurses can see them, hold them, and they still don’t seem to have the weight of reality for that NICU’s staff.

Have you seen people make this shift to unperson someone at the end of life?

If you have medical training, did you ever receive training about how to talk about the dying and endangered? What did they teach you?